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When Dialysis "Becomes Life": Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes
Daniella Levy Erez1,2,3, Melissa R Meyers4,5, Swathi Raman2
1Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, PA, United States.
Frontiers in Pediatrics
|June 9, 2022
Summary
Caregivers of children on chronic dialysis experience lower life satisfaction and well-being. Findings highlight a need for improved support systems for these families managing pediatric dialysis.
Area of Science:
- Pediatric Nephrology
- Caregiver Well-being
- Chronic Illness Management
Background:
- Qualitative studies indicate significant caregiver burden in pediatric chronic dialysis.
- Quantitative data on caregiver lived experiences remain limited.
Purpose of the Study:
- To quantitatively assess the self-reported impact and well-being of caregivers for children undergoing chronic peritoneal dialysis (PD) and hemodialysis (HD).
- To compare caregiver outcomes across different dialysis modalities and with the general adult population.
Main Methods:
- Cross-sectional study of 25 caregivers of children on chronic PD or HD.
- Utilized Patient Reported Outcomes Measures Information System (PROMIS) and free-text commentary.
- Data collected from a large U.S. pediatric dialysis program (2018-2019).
Main Results:
- Caregivers reported significantly lower positive affect and life satisfaction than the general adult population.
- Peritoneal dialysis caregivers experienced more fatigue, sleep disturbance, and lower positive affect/life satisfaction compared to hemodialysis caregivers.
- Qualitative data revealed feelings of loss, need for pre-dialysis information, support groups, and home nursing value.
Conclusions:
- Caregivers of children on chronic dialysis exhibit poorer self-rated health and well-being, potentially linked to social isolation.
- Findings underscore opportunities to enhance the lived experiences of these essential caregivers.
- Interventions addressing fatigue, sleep, and social support are crucial for improving caregiver well-being.
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